Surviving Sudden Cardiac Arrest: A Pilot Survey Take Heart America | October 21, 2016 Mary M. Newman, MS sca-aware.org “We were saved by CPR, an AED and someone like you!”

Surviving Sudden Cardiac Arrest: A Pilot Qualitative Survey Study of Survivors Kelly N. Sawyer, MD, MS,1 Frances Brown, PsyD, LP,2 Roxanne Christensen, MA, TLLP,2 Colleen Damino, PsyD,2 Mary M. Newman, MS,3 and Michael C. Kurz, MD, MS-HES4 1 Department of Emergency Medicine, Beaumont Health System, Royal Oak, MI; 2Michigan School of Professional Psychology, Farmington Hills, MI; 3Sudden Cardiac Arrest Foundation, Pittsburgh, PA; 4Department of Emergency Medicine, University of Alabama School of Medicine, Birmingham, AL Therapeutic Hypothermia and Temperature Management Volume 6, Number 2, 2016

Introduction Rates of survival from out-of-hospital cardiac arrest vary and depend on: Strength of links in Chain of Survival, including CPR and defibrillation Geographical/ temporal circumstances Comprehensive post-arrest critical care, including therapeutic hypothermia Few guidelines and resources to help survivors and friends and family members (FFMs) post-resuscitation Survival is variable and depends on: Optimizing links in Chain of Survival (Cummins 1991) Increasing access to AEDs ( Berg 2010) Geographical/ temporal circumstances (Nichol 2008) Comprehensive post-arrest critical care (Peberdy 2010)

Contemporary Research Focus Functional ability Perceived quality of life Cognitive or neuropsychiatric measures Study limitations Small sample sizes Different methodologies Conflicting results Related literature explores emotional and psychological issues among patients with ICDs Studies focus on: Quantifying functional ability and perceived quality of life and cognitive or neuropsychiatric measures beyond discharge (Raina 2008, Beesems 2014, Balouris 2015) Limitations Rittenberger 2011, Nichol 2015, Smith 2015 Small samples Different methodologies Conflicting results Significant body of literature on emotional and psychological challenges for patients with ICDs Sears 2011, Dunbar 2012, Hazleton 2013, Rosman 2015

Contemporary Research Literature review found high incidence of psychological distress in cardiac arrest survivors Anxiety 13-61% Depression 14-45% PTSD 19-27% Recommendation Psychological screening Early intervention Further research Recent review found high occurrence of psychological distress in survivors (Wilder Schaaf 2013)

Research Gaps Understanding survivors’ psychosocial perceptions of life in the aftermath of cardiac arrest is the first step to development of interventions and resources that meet the needs of survivors… their loved ones… and the larger support system.

Objective of Our Study Identify themes unique and important to cardiac arrest survivors, family members and friends Results may serve as basis for future patient-centered focus groups and development of patient-centered interventions and resources

Methodology Internet-based survey of SCA FDN members conducted among survivors and friends/ family members (FFM), July-November 2013 Use of discrete multiple choice questions and open-ended questions Independent researchers conducted inductive thematic analyses using accepted qualitative research methods Data divided and reviewed independently to ensure inter-rater reliability Key story elements organized into global and major themes No statistical inferences made

Results 1,060 members contacted 30% opened e-mail; 15% clicked survey link 196 members (157 survivors and 39 FFMs) completed surveys (18.5% response rate)

Characteristics of Survivors Age at Time of Study

Characteristics of Survivors Location of Arrest

Characteristics of Survivors Therapeutic Hypothermia Provided

Characteristics of Survivors Received an ICD

Characteristics of Survivors Discharge Location

Characteristics of Survivors Back to Work/ School

Characteristics of Survivors Memory Issues Memory loss near time of arrest: 75% Remembered being in hospital: 58% Remembered discharge from hospital: 79% Daily problems with memory after discharge: 22% Important to note that many survivors do not remember the hospital stay or discharge process and have trouble with short term memory on a daily basis.

Characteristics of Survivors Discharge counseling Who provided counseling? Doctor (65%) Nurse (24%) Other/ unknown (14%)

Characteristics of Survivors Discharge counseling Advice Expect possible emotional, psychological and memory difficulties at home. (5%) “I don’t remember/ don’t know.” (12%) “I was told nothing.” (19%) “Take it easy.” (54%) Take it easy.

Characteristics of Survivors Biggest Challenges (%) CORRECT THIS SLIDE

Survivor Themes Global Themes Major Themes Significance of others “We are in this together.” Too many feelings Seeking a new normal Desire to locate and share with others with similar experiences Subculture identification (different from heart attack) Mental health: anxiety, depression, helplessness, loss of identity, existential concerns Financial concerns Lack of preparation for emotional/cognitive changes Changed relationships Desire for others to understand this is different from a heart attack, a distinction noted in Institute of Medicine 2015 report.

Survivor Quotes I want to talk about it but no one wants to or understands why. People act as if they knew what was best for me Anxiety and depression don’t just go away because you’re happy you survived. People treat me as if I would die at any minute.

The Most Neglected Survivors? Those deemed highly functioning after cardiac arrest are more likely to deceive providers and acquaintances because they “look and act” neurologically intact before hospital discharge. This subset may be most neglected with regard to resources provided at discharge.

Friends/ Family Member Themes Global Themes Major Themes Lack of information at discharge Lack of mental health resources What if it happens again? Memory loss around and after event No information on what to expect after discharge; follow-up appointments centered on cardiology Peer support would be helpful What to expect going forward

Family Member/ Friend Quotes It’s not the same as a heart attack. How common is this? There was a lack of information at discharge. “I wish I had known…” What if it happens again? He is still experiencing memory loss. I’m afraid of leaving him alone. I received no mental health resources. I have to make sure this doesn’t happen again.

Family Member/ Friend Quotes “It would have been helpful to connect with someone who has gone through it, not just a doctor, nurse or social worker.”

Limitations Self-selected sample of respondents with Internet access and functional ability to complete survey May not be representative of population at large Relatively low response rate (18.5%) No statistical inferences made However… Goal to identify themes for further qualitative research Larger studies with multiple survey methods may be warranted

Conclusions Research informs clinicians and researchers on complexity of survival and themes important to survivors and FFMs Use of open-ended questions and thematic analysis provided room for honesty about thoughts and feelings Themes should be used to explore survivors’ perceptions and needs and spur development of resources for survivors and FFMs.

Discussion This qualitative pilot study takes a necessary step in assessing how patients experience life after survival and also provides insights on experiences of FFMs There is a need for support networks and social media groups with expertise from people who are trained in supportive care of others

Recommendations Develop a system for discharge counseling that includes: Follow-up and expert re-evaluation Reiteration of instructions, expectations and resources for survivors Provide resources for survivors and FFM including options for peer support

Sudden Cardiac Arrest Network The Sudden Cardiac Arrest Network provides peer support, opportunities to participate in discussion groups, research, blogging, and more. Visit www.sca-aware.org for more information. And visit us on Facebook and Twitter. One option for providing support to survivors and others affected by SCA

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